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bjbjD ;Mv+, ll do another baby one. When Aaron was about a year old he had been sick a lot
with pneumonia, hospitalized a few times and pretty much wouldn t survive without the placement
of a trach, because he needed a way to clear secretions from his airway. At that time,
the doctors really didn t want to do the trach again because of the extent of his disability
and there was a care conference at the hospital in the small town we lived in and it was after
Aaron had stopped breathing at home and the ambulance had come and he had almost died,
and I said to the doctor, could we get some oxygen out to the house. And he had a sandwich
in his hand and he looked at me, took a big bite of his sandwich and he said, why? And
I said, well, because he almost died last week and we re worried about the time it takes
for the ambulance to get there and so on and he just looked at us and was kind of exasperated,
and said well you know, he is going to die sometime. And that was such a shock to me
because I thought, well, it s our job to support him in what he needs and oxygen is no extraordinary
measure, so, you know, what s the deal? It was creepy, because we re talking about this
child who is the love of our lives, and this guy with a sandwich decides it s not worth
getting him an inexpensive tank of oxygen? But yeah, we got the oxygen and after that,
Aaron did get a trach and he was able to stay healthier, breathe better and we decided to
move to Minneapolis from northern Minnesota at that time because when he had medical needs,
they were pretty urgent and there wasn t medical care up there. But we still used the medical
model at home and we had nurses coming in 16 hrs a day still, and we started to notice
that Aaron s life was way more medical than the rest of our lives and it wasn t because
he actually needed to live with this schedule of medications and treatments. And that sort
of thing. It was because the nurses who were caring for him, were trained to do things
by schedule and schedule was always the best way for them to organize their day. So, basically,
Aaron was living at home and his life was being organized for someone s work. For somebody
s work day, instead of the nurses coming in to support his way of living as a toddler.
h.mB h.mB gd.mB gd.mB urn:schemas-microsoft-com:office:smarttags State urn:schemas-microsoft-com:office:smarttags
City urn:schemas-microsoft-com:office:smarttags place It was called Heritage House Owner Normal
Owner Microsoft Office Word Microsoft, Inc It was called Heritage House Title \v+, Microsoft
Office Word Document MSWordDoc Word.Document.8